Well I finally got my igenex test results today, My ap doc is ok at dispensing antibiotics, but not an experienced llmd and I ask for help in the results.IGM result "negative" (for igenex and cdc) though there were 2+ on the left of the 41,39,34,31,23 and 83 bands and one+ on the right of band 41

For the IGG, it was igenex "postive"- CDC "negative" with 2+ on the left of the 41,39,34,23 and 83 with one on the right of 30,31,58 bands and 2+ on the right of 41- so basically 4 + (2 on each side) on the 41 band for the IGG.

I don't have a handy llmd., so is this considered a "mild positive" for past lymes? or???Just started back on Mino 100 mg MWF after a 10 day washout from the mino for herxing. Also am on 18 mg injected MXT.no swelling, tiredness, redness, not much stiffness, just crushing pain in my toes and flashing pain in my ankles, some knee pain.

Interestingly am on flagyl now for a vag. bacterial infection and have been somewhat better.thanks for any help.

dcpb1 wrote:IGM result "negative" (for igenex and cdc) though there were 2+ on the left of the 41,39,34,31,23 and 83 bands and one+ on the right of band 41

For the IGG, it was igenex "postive"- CDC "negative" with 2+ on the left of the 41,39,34,23 and 83 with one on the right of 30,31,58 bands and 2+ on the right of 41- so basically 4 + (2 on each side) on the 41 band for the IGG.

I don't have a handy llmd., so is this considered a "mild positive" for past lymes? or???

Hi dcpb1,

Uhhh...nope, not a "mild positive" but a pretty clear "yes" on the Lyme positive for IgG! WOW! You sure did get some hits on some pretty Lyme specific bands. The double **s on the left side of the results just mean that these are considered highly specific bands. It is the + or - signs to the right of these bands that you want to look at. In other words, if I am reading what you've written above correctly....

On IgM (present infection), you tested positive with one + sign on antibody band 41. On it's own, this isn't really conclusive for Lyme, because it can also be found in other spirochetal infections that have a flagellum (whip-like tail).

On IgG (past infection), you got a full IGeneX positive (CDC negative is meaningless with all these bands you're showing up with), with single +s on bands 30, 31, 58 and ++ on band 41. This alone would be enough for a LLMD to treat. Band 31 is very specific to Lyme and refers to the Osp (outer surface protein) on the borrelia spirochete known as, Osp A. Band 30 is thought to be a variant of OspA. Band 41 is the protein found on the flagellum or tail of the spirochete and, on it's own, would be meaningless, as it can also be found in other spirochetal infections (e.g. H pylori, syphilis or oral spirochetes, for instance), but in combination with Band 31 is pretty indicative of Lyme. Band 58 is a heat shock protein thought to be specific for Lyme.

Here are some links to read further about your results and what your + bands mean:

In the context of chronic Lyme, IgM and IgG are pretty interchangable and meaningless, because it is a waxing/waning illness and during active phases can re-appear as a present infection, even though chronic. You'll read about this in Dr C's link above.

I'm only a fellow patient, but I feel pretty sure that an experienced LLMD would look at these results and conclude that it's Lyme. The question that comes to my mind is what other tickborne coinfections might be in your pathogen load that may be complicating this picture? In this sort of scenario, mino in low doses would not likely be enough, nor a short course of flagyl. LLMDs treat with multiple abx in various combinations and usually higher doses for longish periods of time and until all symptoms resolve and labs normalize. It's great that your AP doc is so helpful and open...do you think perhaps he'd be willing to consult with one of the LLMDs on the list I sent you previously?

Here are further links, dcpb1, to get boned up on Lyme and tickborne coinfections...yup, it's like taking a course of study, but once entering the "Lymelands," it takes quite a bit of self-advocacy to really learn about the disease and what it will take to get well again. You have supporters here, though, so visit often and ask what you need to ask...someone here will chime in with their personal experience, as we have lots of Lymies visiting the forum.

Hope the above helps in some way, dcpb1! Well done getting your IGeneX labs run...this is a good first step and should help you to get the appropriate treatment to eventually get you back on your feet. Unfortunately, immune-suppressive therapy is contraindicated for Lyme and coinfections, which could well make the situation worse in the long run, but if you can find a way to work with an experienced physician, they should be able to guide your course and get things straigtened out with you so you can ultimately wean off these.

my ap doc is not really "lyme literate", but helpful and kind as it goes- he saw my print out of your protocal for lymes and said he could prescribe that. The llmd you pm'd me is a cash only doc, no insurance, but does treat with antibiotics...I am familiar with him.

Could the methotrexate be making things worse in other words, by suppressing my immune system? Honestly the brain fog is getting so bad, I have a hard time making sense of all the info I am reading. I have an appt with a rheumy on Monday, cuz I thought I should get an appt with one for the mtx that was closer than the Mayo rheummy I was seeing, thought I needed to get an appt, cuz they are so hard to get (long wait times for appts.- made this appt a while back...) Was considering upping the mxt or going on the stronger drugs to get rid of the pain...humera or embrel or something....and with the herxing I had on mino, thought that was my only other options since the antibiotics take so long to work too...

Truly, the emotional stuff is getting so bad, have been considering just giving up at this point. As I have said before, I am unemployable with this pain and am sole breadwinner of the family, am one health insurance payment away from affording the meds I need and access to docs. No sure I am up for the fight with all the horror stories I hear on the forum...sorry...just feeling sorry for myself I guess.

I don't understand how this can be "political" either. Why is this so hard to get treatment for? Just confused I guess.

Thanks so much for clarifying the results for me. Will hope for clearer vision tomorrow.

dcpb1 wrote:Could the methotrexate be making things worse in other words, by suppressing my immune system? Honestly the brain fog is getting so bad, I have a hard time making sense of all the info I am reading.

I don't understand how this can be "political" either. Why is this so hard to get treatment for? Just confused I guess.

I know this is all very hard to understand when feeling so brain-fogged...it's hard enough with a clear head!

Yes, methotrexate is immune-suppressive and when treating these chronic infections, it's important to have a functioning immune system. It may well be the reason why you have such bad brain fog...Lyme loves the brain tissue. As Eva Sapi, a Lyme researcher at New Haven Uni says, "brain tissue is juicey" and is an excellent hang out for these bugs, causing all manner of neuro and rheumatologic symtoms:

I truly do understand your predicament and wish you well in your decision-making process. My best suggestion is to get a copy of "Cure Unknown" by Pamela Weintraub to understand how Lyme became so controversial. It's a good read and will provide you with answers to all your burning questions on this subject and may help further in making a fully informed choice on which way to go with your treatment.

Yes, the path is not easy in treating Lyme and coinfections and what you're seeing here are folk who are in the midst of taking the journey, not those who have gone on to live fully productive lives again. It's said that treatment for Lyme can take as long to reverse as one has had the infections. In many cases, folk don't know when they got infected.

Just a heads up...if you show your IGeneX results to a doc who is not Lyme Literate, they will likely balk at them. This is why it's important to get boned up on what all this means, so you can make a decision for yourself. Many of us here have been through this ridicule and, although the journey to remission may be rough going for a while, the goal is to get well again without the need for a lifetime of medications. So, short-term pain for longterm benefits.

There are rheumy LLMDs who will use the biologics in addition to targeting the infections...Dr. Z in VA and Dr. G in NJ. However, it need not be an either/or situation if you still need to function as breadwinner, but one in which you can use such a drug to control symptoms while also targeting the underlying infectious causes. It's not ideal, but it's a compromise in these sorts of situations. The TNF-blocking biologic drugs (e.g Enbrel and Humira) have been studied in Lyme-infected mice in Finland and have been shown to reactivate the infections. You can read about this here on the Columbia Lyme website - the commentary at the end is of specific interest in this light:

PS. Did not mean to sound naive when I said is this "mild positive?" in first post. That is literally what the nurse said on the phone today when she called with my results. Don't know if she was told that by my ap??? He has said it has been said everyone has a positive lyme test with Igenex, but it was fine if I wanted to pursue it....but, also I was at the funeral home with my dying cousin helping him make his final arrangements and picking out his casket when she called...so I guess I was a little "wigged out" anyway today.

dcpb1 wrote: He has said it has been said everyone has a positive lyme test with Igenex, but it was fine if I wanted to pursue it....

Just want to mention that I didn't have a positive lyme test with Igenex (IGM band 41 IND, IGG band 41 +). And if only the sickest people are going to the trouble & expense to get Igenex testing, then it would make sense to see more positives.

My very best wishes to you - I hope you can work out a plan soon so you can start feeling better.

dcpb1 wrote:PS. Did not mean to sound naive when I said is this "mild positive?" in first post. That is literally what the nurse said on the phone today when she called with my results. Don't know if she was told that by my ap??? He has said it has been said everyone has a positive lyme test with Igenex, but it was fine if I wanted to pursue it....but, also I was at the funeral home with my dying cousin helping him make his final arrangements and picking out his casket when she called...so I guess I was a little "wigged out" anyway today.

Thanks again for all your help.

My pleasure, dcpb1. I'm just so sorry you are in such a dilemma.

No worries - I didn't think you were being naive asking, "Is this a mild positive?" When I first got my IGeneX labs, they could have been in Chinese for all I knew.

The irony with Lyme testing is that it is so bad! This is for a number of reasons - e.g. Lyme is already very immune suppressive, so some of the sickest patients (unable to fight the overwhelming infections) may never get a full positive (this happened in Pam Weintraub's family when you get a chance to read her book - she's medical editor for Discover Magazine and probably knows more about Lyme than most docs will ever know).

I was terribly sick at the outset with 2 bulls-eye rashes which are clincally definitive for Lyme. However, my standard tests were equivocal ("mild" positive) and so my GP refused to treat. Had I had appropriate treatment in the beginning, my LLMD thinks I may not have become chronically ill. He ran IGeneX testing for me and my results were that I only had one + on bands 39 and 41 with an "indeterminate" reading on bands 23-25 on IgG. The crazy thing is that on IgM, this would have been a CDC positive but not on IgG! It can take many years in some cases to produce a full positive for these tests. This is why Lymies consider themselves fairly "lucky" if they show up with some significant bands at all. In combination with my bulls-eye rashes there was no question I had Lyme, but when folk don't see a rash or have been sick a long time or had latent disease that suddenly exploded, this complicates the picture significantly. My GP would have read my IGeneX results as a "mild positive," too...but he was also ignorant that when a person has bulls-eye rashes, they are positive for Lyme, regardless of what any lab says. And this happened here in CT where doctors should be fully aware of how to identify Lyme.

Another problem with CDC testing is that they only test for one strain of borrelia - there are around 100 strains in the US and 300 worldwide! This is discussed here at this Under Our Skin movie discussion panel by Dr. H, a well-known LLMD in NY:

Yet another problem is that when they were creating the LymeRix vaccine (which caused RA in those genetically pre-disposed, which was why they had to haul it off the market), they removed some important bands for the test to prevent cross-reactivity with those vaccinated - bands 31 and 34. You actually showed up with Band 31, which never would have been picked up on a standard test. The "powers that be" argued that they didn't need to return Band 31 to the standard test, because it was statistically less relevant, only showing up in late, previously undiagnosed cases. The presumption being that every case of Lyme is picked up before then or if the person has late stage Lyme without symptoms, they'll be fine. The horrible truth is that many Lymies go undiagnosed for years because of bad testing, which misses around 50% of cases. As you'll read in Pam Weintraub's book, some of the sickest patients DO test positive for Band 31, which is very highly specific to Lyme. She also explains the above and why this band was argued to be "statistically insignificant."

Perhaps another issue that should be mentioned is that ticks are really filthy critters and live off of wild-life and domesticated animals for 2 years, picking up everything the blood meal of the moment is passing to them. They then transmit this to humans. The western blot test only tests for Lyme and not possible coinfections, such as babesiosis, bartonella, erhlichioisis, mycoplasma, various viruses, etc. Some of these can overburden immunity, too, also abrogating western blot tests.

The whole thing is quite a mess...which is why we can only really suggest to people that they do the research for themselves and decide what makes best sense to them. Pam Weintraub's book is one of the most comprehensive resources out there and is also full of patient stories, so not all about politics and science. So, if you really want some good insight on all this, it is worth picking it up to read. Your AP doctor might also like to read a copy?

Final thought: I've spoken to hundreds of folk who have had IGeneX testing run...can assure you that a very hefty percentage of folk don't test fully positive by IGeneX criteria, like Crowchez mentioned above. There are also a good number like me who know they had a tick bite and had a bulls-eye rash, but still don't test positive on IGeneX. This is why ultimtely Lyme has to be a clinical diagnosis by a LLMD who really knows their stuff and can identify the myriad of symptoms. Coinfection testing is pretty horrible, too, and often it is the full clinical and lab picture that needs to be properly assessed for these. Most LLMDs feel it's just far safer to treat suspected coinfections than not, because these just leave Lyme patients unwell, if under-treated or missed.

I'm so sorry to hear you had such a sad day to walk through with your cousin. No wonder you are upset. I have been through this process with loved ones and it's never easy. This is a lot to take in on top of such emotive stuff. Maybe you should just give yourself a few days to breathe before you begin looking at all this? You have so much on your plate and so deserve just to be kind to yourself. I'll keep you in my thoughts.